Tag Archives: chemical sensitivity

Catch-Up Mondays: How am I ever going to live with Chemical Sensitivity? – revisited

This was first posted on February 9, 2013.  Since that time I have continued to blog and stand up for those of us with chemical sensitivities, environmental illness, and chronic illnesses.  I have published my book and made a valiant effort to get the word out about environmental illness and what it is like living in isolation and fighting to not only survive but find the courage to move forward and dare to hope that life will get better.  Thank you all for sharing with me your stories and listening to mine.

Someone typed this question into a search engine that led them to my blog. How do we live with chemical sensitivity? We have to put one foot in front of the other and trudge through the unknown of what does or does not work for us. We have to live with others (many in the medical profession) not believing that we could be reacting to even trace amounts of a chemical. We have to convince others to avoid chemicals and the wearing of fragrant products (which are loaded with man-made chemicals to produce these fragrances).

How do we live with chemical sensitivity? We become diligent in keeping our environment safe, learn to become an advocate for our own health despite the naysayers, and we learn to deal with isolation. The isolation is many times much harder than trying to convince a doctor that you are not malingering and you truly are reactive. We learn to deal with the “loss of self” that often accompanies the loss of friends who do not care to make themselves safe for you to be around them, the loss of a job as it is difficult to be a productive worker in a work environment full of chemicals, and the loss of our beauty and hair care products.

To live with chemical sensitivity you need to develop a “thick skin”. You need to begin to care more about your health and welfare than you do about what others are or are not saying (You can’t go to the mall shopping with me?  Can you at least go to lunch?  OR How are you? Is there anything I can do the help? How can I make it so that we can be together?). To live with chemical sensitivity you need to say I am going to fight, I am no longer going to be a victim, I will be a SURVIVOR! To live with chemical sensitivity you need to focus on what you still can do and accomplish and not allow yourself to dwell on what you cannot do or places you cannot go.

I have dealt with all these demons. I have dealt with the loss of friends but relished in those that have stayed around and made the effort to be able to be around me. I have dealt with the loss of a job and sitting at home wondering “who I was” and “what would I ever be able to do again”. I have dealt with the medical community (mostly the workers’ compensation doctors and thankfully not my medical caregivers) not believing my condition and stating that I had a somatoform disorder. I have thrown away clothes and learned to live with those that could easily be washed and dried rather than dry cleaned. I have given up my contact lenses in lieu of glasses because I cannot tolerate the chemicals in the lenses or the solution. I have given up coloring my hair and been forced to allow it to stay gray. I have let myself stay in the victim role far longer than I should have.

Slowly I have thumbed my nose at those demons. In place of a job I now have written a book  soon to be published about my life and started writing this blog where I have found so many comforting words and words of encouragement from others in my plight and from those who do not suffer from this affliction. I no longer focus all my attention on “who I was or what I did” and spend more time realizing that I am still the same person but with limitations (maybe a better and more caring person because of these limitations). I have learned that I am okay with my glasses and my casual clothing. I am mostly okay without my make-up and hair coloring. I now say that I am a SURVIVOR! I refuse to allow the victim mentality to swallow me up and make depression my constant companion as it once was, thus allowing me to be the victor not the illness or the depression.

I have sought out therapy, I have surrounded myself with the love of my family and those friends who have hung with me, I have found hair stylists willing to come to me and cut my hair in the backyard or to suit up in tyvek to come into my home and cut my hair, I have started sewing again and doing crafts that once gave me so much joy (using only products that I can tolerate) and I am telling the world what mold, mycotoxins and chemicals can do.

So – How do you deal with chemical sensitivity? You first choose that you are going to take control and do whatever is best for you despite those that are against you. You surround yourself with those that you can count on for love and support. You rebuild your life by doing what you can and not allowing what you can’t to control you. You fight to survive.  You fight to find the courage to continue on and you fight for the hope that you will be okay.  Then you stare those demons of depression and victimization in the face and tell them NO! NO, I WON’T BE A VICTIM! I AM A SURVIVOR!

For those of you following along or new to this blog: How do you live with chemical sensitivity?

May is Multiple Chemical Sensitivity Month

round_MCS-awareness_badge

The Month of May has been dedicated as Multiple Chemical Sensitivity (MCS) month.  I suffer from MCS (also known as Environmental Illness and Chemical Sensitivity). I did not always have MCS.  I was a very active and busy stay-at-home mother of two.  I was active in their school, their activities, as well as in our community.  I lived by my at-a-glance calendar to know when and where I was supposed to be at any given time on any given day.  I sewed and did craft fairs. I baked and canned, and did things with my friends.

My MCS began after a mold exposure in my work place where it first manifested itself in severe sinus issues and brain issues (although I didn’t realize the brain issues were happening in the beginning).  My boss would bring a phone message that I had written and placed on his desk to have me explain it to him.  I remember many times writing a message and then realizing it was sloppy or didn’t make sense and redo it.  The sad thing is that even then the messages would not make sense.  Yet I still had no idea my brain wasn’t functioning correctly.

I didn’t know what was wrong with me or why I was constantly getting sick.  It took nearly a year to discover that there was mold in the office and and a few more months before my ENT could get mucous taken from my sinuses to grow in a culture plate. I rapidly began reacting to all sorts of medication and developing food allergies.  The chemical sensitivity took a little longer to rear its UGLY head.  When it did, I was shocked.  I had seen others where the masks and walk around in a daze but that wasn’t me!  At least that is what I kept telling myself until it was me and there was no escaping it or denying it. Mold isn’t the only thing that can  push someone into “MCS or environmental illness land”.  An extreme exposure to pesticides will do it.  An extreme exposure to chemicals in the workplace can do it.  Slow but steady exposures to chemicals can also eventually cause someone to become sensitized to chemicals.  How much is too much?  There is no answer to that.  Everyone reacts to different levels of a chemical.  Not everyone has the same toxic load already before being exposed. Do people think we are crazy?  Do they think it is all in our head?  There are some that do.  Sadly there are family members who condemn their own brother or sister or mother for having a sensitivity to chemicals.  They truly do not want to accept that this condition actually exists.  For if this exists, they may have to change their habits to avoid causing further illness to their family member.  I have seen husbands leave their wives over this illness.

The isolation that MCS causes is dark and lonely.  Very lonely.  For that reason I chose many years ago that I would begin writing my story.  I would become an advocate to the best of my ability. I started by writing my story which is now available (Allergic to Life:  My Battle for Survival, Courage, and Hope).  A link to purchase is in the sidebar.

Throughout the month I will be reblogging posts from some of my fellow bloggers who are also posting about MCS Awareness month. Last month I celebrated my 2 year Blogiversary.  As a celebration, I began a giveaway on Rafflectopter.  I several items included in the giveaway.  Take a moment to click on the link and enter the giveaway which runs through the end of May.

A brighter smile!

I don’t know if my smile is really any brighter but at least my teeth are clean and inspected.

This morning I drove across town to my regular dentist (my biological dentist is 45 minutes away so I only use him when I need work done on my teeth).  My appointment was at 7:45 a.m.  I arrived on time and was taken into the room they use for me.  It is a little further away from the other exam rooms.  The paper guard was placed over my chest and I was told that my hygienist would be in soon.

I sat there with my mask on waiting until I had to remove it to get my teeth cleaned.  I now make it a point to go every six months even if it does make me feel bad.  If I had been going regularly the chances that I would never have had to have my molar pulled last fall would have been better.

My hygienist walked into the room and said to leave my mask on until she had everything assembled.  She told me that she had not put on any perfume and then asked another tech where the pumice they use for me (unflavored).  She made sure she was wearing latex-free gloves and began my cleaning periodically asking if I was doing okay.

Once we were done, she told me to put my mask back on until the dentist could come in and examine my teeth.  I did and sat and waited.  He walked in shortly after and started to grab gloves, another tech grabbed him quickly and reminded him that he had to use latex-free gloves and then gave him the correct box.  He also made certain to tell me that he and the entire office staff were not wearing perfumes or cologne.  Mask removed, he examined my teeth and said that they all looked fine and recommended as my other doctors have that I not remove the remaining mercury amalgams unless I have problems….no need to stir up a hornets nest he said.

Once finished I walked up to the front desk to schedule my next six-month appointment.  While she was looking for the date she told me that one of the girls had sent a text to all the office staff to remind them of wearing perfumes/cologne.

Yes my lungs hurt by the time we were done and I coughed all the way to the car and sat in the car coughing and gagging for a while before I felt okay to drive home.  But I would have been far worse without the extra special care the staff took to not expose me any more than necessary.

Do you have such a dentist?

Beauty of a Woman BlogFest 2014

beauty of a woman

I am pleased and honored to again participate in the Beauty of a Woman BlogFest hosted at August McLaughlin’s Blog (Please visit August’s site and read all the other submissions).  To visit my Beauty of a Woman BlogFest post from last year, click here.

In going through my files on the computer recently I came across a file entitled “Tears of a Woman”.  It was a video clip that I found and had saved some time ago because I thought it was so beautiful.

The words that are displayed as the music plays resonates with me; especially the following:  “You see my son, the beauty of a woman is not in the clothes she wears, nor is it in her face or in the way she does her hair…The beauty of a woman resides in the eyes.  It is the door to her heart; the door where love resides.

We are conditioned through magazine photo after magazine photo that beauty needs to be achieved through hair products, clothes, and make-up.  It is hard to get through a commercial break on television without seeing an ad for beauty products.  I bought into that in high school.  I began wearing make-up.  My freshman year I had to have the latest hair cut, the Sassoon.  Of course the hippie culture was all around us and I began wearing less make-up but never left without blush, mascara, and lip gloss.  My clothes weren’t department store fancy but they were my own creations.  I had learned to sew in junior high school and a neighbor girl down the street and I would spend hours at the fabric store picking out patterns and trims. Some of the dresses I made were from these patterns (patterns that I can’t have any more but had my husband take pictures of for me).

This dress was done in olive green suede cloth with beautiful embroidered ribbon all along the front zipper.

This dress was done in olive green suede cloth with beautiful embroidered ribbon all along the front zipper.

As I grew older my amount of make-up didn’t change much.  I did spend money on lotions and creams for my face and body.  I spent money and time getting my hair done (highlighted or colored and cut).  When I chose to go back to work, I spent more money on my clothing.  My jeans, tees, and sneakers from time spent as a stay-at-home mom wouldn’t be acceptable in the “work world”.  I was finding myself (or so I thought) and becoming more of a woman of the world.  My hair was done, my clothes were new, I had new shoes, and even started getting manicures (including the infamous gel nails).

Suddenly all that changed!  I was exposed to mold in my work place and I began to develop sensitivities to all chemicals.  I began to feel ugly as I gave up my contacts for old glasses that I hadn’t worn in years.  I gave up coloring my hair and getting it cut because not only could I not tolerate the chemicals in the hair color but I could not tolerate the salon either.  I gave up my nice new clothes because they were contaminated with mold and mycotoxins and were making me ill.  They were traded in for cotton clothing that could easily be washed.  I gave up all my lovely new shoes for a pair of ugly white sneakers.  And worst of all, I gave up my identity.  Survival meant that if I were to leave my house for the doctor’s office I needed to wear this ugly charcoal mask that hid my face and all expression.

Me wearing my mask.

Me wearing my mask.

I was sent far away from family and friends to the Environmental Health Center in Dallas for treatment.  What I found there surprised me.  I was not alone! There were other women like me.  These women were wonderful, compassionate, helpful, and supportive.  They opened their hearts to me.  The women also hid behind masks, sported uncolored and uncut hair, and wore simple clothes.  Despite their lack of what the world tells us is beautiful, these women were beautiful to me.  These women had gone through similar loss of health, loss of friendships, loss of belongings, and loss of identity.  I was not judged by my looks.  My unkempt and uncolored hair did not draw strange looks of disapproval.  My mask did not draw fear that I was somehow carrying some dreaded disease nor did it draw the looks of sympathy that I had seen in the outside world.

These women were beautiful through their eyes and their hearts that they opened up to me freely and without reservation.  Their beauty was in the kindness and compassion that comes deep from within.  I have found this kind of friendship and compassion through this blog as well.  It has come from women who know this struggle and from women who do not share my struggles but have reached out and touched me through their kind spirit.

Again, I dedicate this to all those women who have struggled to keep going and who have been forced to give up what society feels is beautiful.  For all those women who have struggled, been forced to give up their identity through their clothes and cosmetics, and dealt with the pain of chronic illness (both the visible and the invisible), I say to you:  “YOU ARE BEAUTIFUL TO ME!”  This blog is dedicated to you.  May your spirit continue to show through those lovely eyes of yours and pour from your beautiful hearts.

Lunch with the authors

In July I posted a blog titled, “Talking About Published Authors” .  (July seems like years ago and yet it has only been six months.)  So much has happened since my post in July.  My book became available, I have had a book launch party, I did a “Meet The Author” at a health food store near my daughter’s home, and most recently I became Membership Director for Rave Reviews Book Club (an online book club).

Before all these things happened I was invited by Pattimari and Peter to join an online group of authors, PNP Authors.  I was welcomed into this group by an amazing group of people.  The blog post “Talking About Published Authors” features links to an interview Pattimari did with me and a blog post she wrote featuring me and my book.  We have contacted each other and worked together back and forth via the PNP Author website and email.  We had never talked on the phone or met in person.  A few days ago I received an email from Pattimari saying that she and Peter would be in town and invited my husband and I to lunch.  She also asked that I bring them a signed copy of Allergic to Life.

Of course I was very excited to finally get the opportunity to meet these wonderful people in person.  There is one cafe in town where I have been able to dine outdoors and they have one item on the menu that I have been able to tweak to suit my allergies.   I went ahead to get us a table and my husband would join us there.  I arrived at the cafe and my jaw dropped.  I hadn’t been there in quite some time.  I forgot that they put up a tent in the outdoor seating area to allow more customers to eat there during the winter months.  I couldn’t dine in there because all the chemicals and fragrances would be trapped in the tented area.  I went inside wearing my lovely charcoal mask and waited to be assigned a table.  I pointed to a couple of tables in the back of the courtyard outside of the tent and asked if we could sit there.  The answer was no because there was only one way in and out of the tent and that was through the cafe itself.  I began to worry about what I was going to do.  We had people coming from out-of-town to have lunch with us and my options were gone.

The hostess being the resourceful person that she was had a solution.  She opened up the gate to the courtyard and brought out two small tables and four chairs and set them up on the sidewalk area in front of the Cafe.  She came in an out of the cafe to serve us and check on us.  What a wonderful young woman!

Lunch with Pattimari & Peter

Lunch with Pattimari & Peter

This just goes to show how creative and kind the staff are at Toni’s Courtyard Cafe.

Catch Up Mondays: How Allergies Prevent a 50 Shades of Grey Life

A Lot of Women around the Pool are Reading the Same Book

Amanda from Celiac and Allergy Adventures featured a blog post with this title.  I loved how she compared allergies and Celiac Disease with the book, 50 Shades of Grey.  For me adding in mold and chemical sensitivities and Amanda has it right on.  I thought I had posted this in 2012 but in searching my past blog posts I only found a few comments and Amanda’s text wasn’t shown.  So for all of you, please visit Amanda’s blog and read this post.

Critical Day 3: The aftermath

Hello everyone.  Critical Day 3 ended yesterday.  No more lamb required.  I can go back to eating normally with the exception of the foods that I have gained through the LDA (low dose antigen) process.  I still can’t have my almonds, lettuce, tomatoes, oats, etc.).

I got up this morning to the thought of NO MORE LAMB!  However, there was still some ground lamb left.  At $9.00 a pound I wasn’t going to throw it out so I had a patty with an egg.  The egg was delicious – the lamb just didn’t do it for me today.  Unfortunately there is still a good amount of lamb stew left over.  It doesn’t freeze well and I can’t throw food out.  My husband and I will both have stew for lunch.  Tonight will be beef, chicken, pork, or anything but lamb!

I am still dealing with a headache and being discombobulated.  I also still have itchy arms.  More information about my LDA this go around can be found here, here, and  here.

I hope you are all having a good day.  Me, I need to go and rest and let my head calm down.  I came into the office to do a little bit and have been in front of the computer far longer than I thought I would be or needed to be.

Critical Day 2: Shot Day

Food & Chemical Shots

Food & Chemical Shots

The welt closest to my elbow is food and the second is my chemical shot.

IMG_2303

This is from my inhalant injection.

I am not feeling well so will post more tomorrow.

Girl allergic to books quits school

I know all to well what it is like to handle old books or books that have been somewhere that may have air fresheners or a smoker in the household.  I don’t accept used books from others to read.  I don’t buy books from used book stores.  I was buying my books directly online and now that I have a Kindle rarely buy paperback books at all any more.

I have to worry about chemicals, dust, and molds sending me into a severe reaction.  I would have to worry about these books contaminating my safe space here at home.  While I did attend two years of community college (way before the age of internet and computers), there is no way I could do it today with all my allergies and sensitivities.  My heart goes out to the young woman in London who suffers and for all the same reasons as I, cannot get books from a library.

Many of you are familiar with my friend Michellina at the-labyrinth who is attending the Victoria University in Australia.  She has made great strides in getting accommodation for her sensitivities.

 

Can Perfume Make You Sick?

For most of you who follow my blog, you already know my answer to this.  You have heard me talk about it many times including a post I wrote, Layers of Fragrance.  From the time a person gets up in the morning (and probably more so with women), they are putting layer upon layer of fragrances on their skin and at the same time adding chemical after chemical which is absorbed through the skin.  From the shower products, to the lotions and perfumes, to the laundry soaps and fabric softeners or dry cleaned clothes, and lastly their perfumes or cologne, all those chemicals are slowly poisoning their bodies.

Their answer is that they smell nice and they like the way their shampoo leaves their hair smelling or the lotion leaves their skin smelling.  They haven’t become sick (Or Have They?) so why give up these wonderful delicious smelling products.  I say that they are having health issues that are not sending big signals that they are aware of.  They may be having big health issues that their doctor isn’t able to figure out the cause of so they are given medications.

Thanks to a recent Facebook by my dear friend Jennie Sherwin, I read this article from Prevention.  It just repeats what many of us who suffer from chemical sensitivity (MCS) have been saying for some time.  The chemicals in all these products are indeed making us sick.  Thank you Jennie for sharing this.